Multiple Endocrine Neoplasia Type 1

Question: What are the symptoms of Pancreatic tumors in Multiple Endocrine Neoplasia, Type 1? Hi :), Is there anyone out there in YA who has MEN, Type 1, or a doctor that can give me some involved information? My question is about Wermer's Syndrome, or Multiple Endocrine Neoplasia Type 1. I have had two doctors tell me that I definitely have it; two tell me that I don't have it; and one tell me that he doesn't know. I have a pituitary microprolactinoma, and have had a parathyroidectomy, but if there are pancreatic tumors, they have not yet shown up on scans. I was told that I don't have MEN, type1 because of this. I have also been told that I do have it because I have all the symptoms of pancreatic tumors. The doctor said that tumors are probably microscopic and haven't shown up yet, and its better that way. The slower they grow, the better off I will be. What are the symptoms that I can look for? I cannot afford DNA testing, and my insurance won't pay for it. I need to know some symptoms that can be readily seen in my everyday life. I forgot to mention- during the parathyroidectomy, three 1/2 of the four parathyroid gland were removed. They were not malignant, but they all had tumors/growths- whatever it is that people with MEN have.

Answer: In MEN1, all four parathyroid glands tend to be overactive. They release too much parathyroid hormone, leading to excess calcium in the blood. High blood calcium, known as hypercalcemia, can exist for many years before it is found by accident or by family screening. Unrecognized hypercalcemia can cause excess calcium to spill into the urine, leading to kidney stones or kidney damage. Nearly everyone who inherits a susceptibility to MEN1 (a "cancer") will develop overactive parathyroid glands (hyperparathyroidism) by age 50, but the disorder can often be detected before age 20. Hyperparathyroidism may cause no problems for many years or it may cause problems such as tiredness, weakness, muscle or bone pain, constipation, indigestion, kidney stones, or thinning of bones. Rare EFFECTS: and I stress RARE! Occasionally, a person who has MEN1 develops an islet tumor of the pancreas which secretes high levels of pancreatic hormones other than gastrin. Insulinomas, for example, produce too much insulin, causing serious low blood sugar, or hypoglycemia. Pancreatic tumors that secrete too much glucagon or somatostatin can cause diabetes, and too much vasoactive intestinal peptide can cause watery diarrhea. Other rare complications arise from pituitary tumors that release high amounts of ACTH, which in turn stimulates the adrenal glands to produce excess cortisol. Pituitary tumors that produce growth hormone cause excessive bone growth or disfigurement. Another rare complication is an endocrine tumor inside the chest or in the stomach, known as a carcinoid. In a person with MEN1 a carcinoid tumor rarely secretes a hormone. In general, surgery is the mainstay of treatment for all of these rare types of tumors, except for gastric carcinoids which usually require no treatment.

Question: Thyroid Cancer Pain? What is the Cause and treatment? Is there an experienced Oncologist that can answer this? I have Multiple Endocrine Neoplasia type 1 (M.E.N. 1). It first manifested with parathyroid tumors (benign) as well as Thyroid Tumors (papillary malignancy). The indicating symptom which led to the diagnosis was severe joint pain in all major joints. The pain was first attributed to high serum calcium levels (13+) and an assumed psudogout condition from the high ca levels based on the joint pain. Total thyroidectomy/parathyroidectomy completed. Then Metastasis to both lungs with approximately 20 3mm papillary tumors which after a V.A.T.S procedure found the tumors were mixed with sarcoid tissue. this is where I am at now. My question for you is this: I am still experiencing massive joint pains in my major joints. All blood chemistry is normal now and RA tests are negative. I take massive Morphine doses in order to just get up out of my chair. The joint pain is crippling, and none of my doctors have been able to find ANY REASON for the pain. CT's and MRI's are negative for psudogout or cartilage degeneration. Can the mere existence of the Thyroid Cancer tumors in my lungs be the cause of joint pain? Can my body just "hurt" because I have cancer? Is this type of complaint common? My doctors are less than understanding and are always hesitant to prescribe the pain meds for lack of a positive diagnosis and no physical evidence as to the cause of the pain. Could it be the sarcoid tissue causing the pain? Please help. I am so frustrated with my doctors, they never prescribe enough pain meds to allow me to get on my feet for any length of time, and I have 5 young kids to try to keep up with!

Answer: You might want to contact ThyCa http://www.thyca.org/ they would probably be able to help with some of your questions (Papillary Q's)... but they don't deal with M.E.N. Sarcoid tissue can cause aches and pains. I really think you should look for another doctor, one that will listen to all your concerns.

Question: Tumors causing Diabetes/ Causing Insulin Resistance? I have Multiple Endocrine Neoplasia, Type 1; from tumors in my Pancreas, I have Diabetes, Type 2. I just posted a question about why my insulin resistance has increased: http://answers.yahoo.com/question/index;… I'd like to rephrase: Could it be that the Pancreatic tumors are making me more insulin resistant? Could they be affecting me so that although I have lost weight and have gone down several sizes, I am becoming more insulin resistant anyway? Could there be other tumors growing somewhere else in my body that do this? And could someone explain why these tumors in the pancreas cause diabetes? I'm not going to freak out; I will take everything you say and run it by my doctor; and bless you from the soles of your feet to the crown of your head... ;-) (It's just that my doc is a little dim- he can't figure this out on his own [Jeez, I wish I had studied medicine! I tell you, a Literature Major is no help! ;-) ] )

Answer: MEN I usually involves insulin-secreting tumors in the pancreas which would make you hypoglycemic; but occasionally can involve glucagon-secreting tumors which would make you hyperglycemic (glucagon essentially does the opposite of insulin). It has also been observed that people with MEN I tend to have higher insulin resistance than others (Wagner et al 2005 European Journal of Internal Medicine 16(7): 507-509). This has not been explained. On a side note, it is obviously kind of weird that you would be going down in dress size, but up in weight. You mentioned in your other question that your legs were swelling. Maybe you are losing body mass, but retaining water in your legs.

Question: Anyone know a good New York City doctor? Anyone know a good Internist or General Practitioner who accepts Medicaid/Medicare, is as sharp as a razor, and would be able to handle an intelligent, willful, and somewhat irascible patient? I have Multiple Endocrine Neoplasia, Type 1 (or Wermer's Syndrome); and therefore, I have several chronic illnesses; I am also 14 years Clean and Sober; and I suffer from several mental illnesses for which I am on meds and being treated for by an excellent Psychiatrist and Psychologist. Any takers? Thank you, but I can do a web search by myself...I was hoping that someone would make a personal recommendation of a doctor they know... I ask because my doctor has changed his hour and is now at the clinic only one day a week... I need someone I can see on days other than Monday, and that I can call for emergencies and such like... Any doctors interested in a challenge? I have lots of fun diseases! Come on; MEN, type1 is rare!

Answer: Dr. Claudia Cooke is one of the best, if not the best, doctors of internal medicine I have ever seen. She is integrative in her approach, and will specifically tailor both allopathic and holistic/naturopathic remedies to each patient. She is herself a strong woman with a great personality and sense of humor. As for whether she will accept Medicaid/Medicare, you will have to ask her. She always has solutions, in any case, and will help you if she can or give you a great referral. Google her. She is all over the net. All the best, ThatGirl. Peace and good health.